Hi!

I am Grace-Louise, but sometimes Mummy and Daddy call me their‘Princess Warrior.’ They started calling me this when I was only a tiny baby after the Doctors told them that I had something called CDKL5 Deficiency Disorder. Not many people have, or know very much about this rare condition, but my Mummy and Daddy could probably write a book on it now!

The doctors said that I was always going to need 24hr care and that there will be lots of things that I probably wouldn’t be able to do, such as walk, talk, or have purposeful use of my hands, but I have decided to prove them wrong a little bit at a time.

I have worked so hard to be able to pull myself up, to stand and even to take steps, despite having lots of seizures every day, which means that I must take lots of medication through a special button in my tummy.

My grown-up friends at the hospital have helped me so much, but they have lots of other boys and girls that need their help too. I have been doing so well and now the Doctors have said that with Intensive Therapies, I might be able to achieve my goals!

This is where you come in… I really need this intensive physiotherapy to help me to become stronger and more independent. I will need to travel for this expensive treatment as I can’t get it here in Scotland. I would also really like a specialist buggy to keep up with my three big brothers and a safe bed designed just for me because I must sleep next to Mummy so that she can watch over me at night; but Daddy’s snoring is getting a bit much!

I’d love for you to come to my Princess Warrior Tea Party on Saturday 20th April ‘24 at the West Halls, Main Street, Houston, Renfrewshire to share a cup of ‘Positivi-tea’ with me to help raise some much-needed funds.

If you can’t manage to make it along, don’t worry you can still help me by donating to my ‘Just Giving’ page.

Thank you very much!

Big hugs from Grace-Louise, ‘Princess Warrior’ xxx